My talk:Â (numbers in parentheses are the slides)
(1)My name is Debora Wade and I have had Crohn’s disease for over 20 years.Â Since December of 2007 I have been experimenting with helmitherapy.Â In other words, (2)I have approximately 15 of these hookworms living in my small intestine as I speak. Read the rest of this entry »

November 11-14 in Los Angeles, the BTeR Foundation (BioTherapeutics, Education & Research Foundation) is hosting an international conference on biotherapy, including helmintherapy:

http://www.bterfoundation.org/icb/icb2010.htm

Dr. Pritchard from University of Nottingham will be giving a talk:Â “A Critical Appraisal of Worm Therapy” on the 11th, and on the 14th will be having a workshop on “Practical Helmintherapy”.

http://www.bterfoundation.org/icb/program.htm

I’ve been invited to speak as a patient trying this therapy.

I’d like to present an honest account of my and other people’s experience with helmintherapy.Â Mostly, I’d like to establish a liaison between patients and researchers.Â What would you, as a potential or current patient of helmintherapy like to tell or ask the researchers?Â What has your experience been with your disease and helminths?Â What would you like to see in the future with this therapy?Â Are you interested in becoming a case study or linking your physicians with other researchers?Â How can we best unite the community of researchers and the “underground worm therapy” movement to help legitimize and share our data?

Disappointing. 10 hookworms didn’t really work statistically for asthma or allergies, but there were immune changes.Â I wonder what “mimic most closely natural infection” means (last line of abstract for asthma study)? Less at once, more often? Or more than 10? I am feeing extraordinarily lucky that 10 hookworms caused such a pronounced change in me; first for the worst, then for the better. I started with 10 hookworms De. 2007, got edema, arthritis, a fever, diarrhea.Â By month 4 I was in remission, but added 2-3 worms a week for a total of 37.Â Then I lost them somehow by September 2008 and lost efficacy.

I got 10 new hookworms in February 2009, then 10 more in late September 2009. My last egg count was 1400 epg. My CRP (measure of inflammation) has been normal since March 2009.Â So 20 worms are working for me.Â Weight’s been normal since March, I can eat most foods but still get diarrhea from too much fiber.Â Now my hormones are causing anxiety/depression, but I’m assuming that’s un-worm related.Â Â I’m almost 38 years old.

I wish we knew the ideal dosing number and dosing schedule.Â It seems that those with the best response are getting at least 20-30 hookworms, though I also know of Crohns patients who had to terminate because 20-25 worms were way too much at once.Â I wish these studies were faster since we’re just dosing in the dark.

Article after article extolling the virtues of helminths’ ability to prevent allergies and autoimmune diseases always end in quotes like this:

“The hope is that the work could aid the development of new treatments which work in the same way as gut parasites, by dampening down or rebalancing the immune system so that the body does not respond to allergens and trigger asthma attacks.”

“Here, the view is presented that assessment of the immunophysiological response to helminths could identify that infection with specific parasites would be therapeutically useful (although many helminths could not fulfil this role) and lead to precise knowledge of the immune events following infection, to identify ways to intervene in disease processes (in the absence of infection per se) that can be used to treat, and eventually cure, inflammatory and autoimmune disease.” Read the rest of this entry »

There are very few studies on the effect of helminths on humans. As a patient trying this therapy, there are few immune markers we have on hand to check immune response. We have measures of inflammation, like CRP and SED rates, but only in the research setting can one measure IL-10, the T 1 and T2 arms, etc. All we have is eosinophilia and standard stool tests to assess worm burden.

Eosinophils rise in response to hookworm infection, seeming to peak between weeks 3-10. This study describes that eosiniphils peak between days 38-64 :

But my favorite study, the MS study in Argentina, where they tracked 12 MS patients already infected with helminths and compared them to 12 other MS patients over a 4.6 year period, only recruited the helminth infected patients if their eosinophelia was high, (800-1800 mm3) and it stayed that way for the duration of the study. Their quantitative egg counts were also high: between 1,180 and 9,340 eggs/gram.

Eosinophils reflect parasitic infection, and the higher the number, usually the larger the worm burden. One indication that one has lost their worm infection would be having an elevated EOS for an extended length of time, then having it fall to baseline. Obviously, stool tests would confirm this, as well as symptom regression. In the dose-ranging trial, the higher doses resulted in higher EOS counts, though they did not test longer than 12 weeks.

I only tested my EOS at baseline and 18 weeks, so I never tracked a rise and fall. Baseline values were 74 cells/mcL and only rose to 192 post infection. (Normal is 15-550). Remember, I added worms from weeks 10-18, which may have provoked an immune response that curtailed the new worms from attaching, and possibly displaced some of the first 10, like this capsule endoscopy study shows. So by week 18, perhaps I had very few worms…

I will be testing EOS at weeks 3, 6, 9, and 12 to see how they respond to 10 larvae. I don’t think 10 hookworms are going to be enough to cause persistent eosinophilia. And like the MS study, it seems important to get and maintain a large enough worm burden to stimulate eosinophilia, and maintain a higher egg count. I’m very curious what my results will be this time…